Love, Life and Autism

This was written on the 16th October 2017. I will add an edits, dated and in brackets, to make it easier to understand, I hope! At the end, is an update that is current and that I will continue to write about in the coming weeks.

I had forgotten my password and access to here in my blog! It has taken me such a long time to get back as I kept pushing to the bottom of my to do list, the things needed to get back online. (I did, again, loose my log in details and forget the, that I had to rest it all again, a few months ago. 25/07/18)

I have written some posts while out of action here at my blog site. I will post them over the coming days. (I have journals everywhere! I have to train myself to journal it all in one spot, for future reference for myself. I am planning on making here the spot for it all! 25/07/18)

So much has happened and I have been challenged and sad and hurt. I have also been excited at the prospect of what each  new day will bring and what I can achieve each day. Some days are the run of the mill days of house chores and washing and folding clothes. Some days are sewing and learning new crafts with friends. Some days are filled with judgments from others and from me to others and toward myself as I process and work through some of the latest events that have taken place. (In addition to the latest events that took place back when I made this draft, today has seen me face the reality that my dad’s brain MRI results are back and that his diagnosis of Dementia has a very poor future prognosis. More about that another day).

Some days are full of questions and seemingly no answer I want to hear. Some days are full of surprises and the best surprises come from my boys! (Although I wrote this last sentence over 7 months ago, it stands true today, the 25th July 2018).

Today’s thoughts for the 25/07/18:  this next six month is going to be crazy busy and stressful.

My dad has one more week in respite care before returning home, to a home that is really not safe for him anymore and a wife (my mother) that lives in denial that dad has been suicidal and has depression and is becoming frailer. It’s time to find a new place for them to live or see them go their own way as it has come time for mum’s hand to be forced and she will have little choice  now as we face an unknown future for dad.

Next week also sees the review of my boys NDIS plans. I have to allocate time to plan and prepare for these meetings, set goals with the boys needs in mind and of course their hopes and desires of what support will look like for them. I always find this such a stressful time of fighting for their right for support and proving their needs and suing the right words and language to get the message across, all the while hoping that the person doing the review is compassionate and understanding and most of all understands that autism support now, particularly for my boys, is almost guaranteed that they will not require ongoing support of NDIS nor Disability Pension Support as they transition to adulthood and independence. But also realizing that this transition is likely to be delayed compared to their neurotypical peers as is the nature of Autism Spectrum Disorder.

I am also still recovering from travel and have not been able to have a full nights sleep since my return six nights ago. I average three to four hours sleep and then it is tossing and turning, being woken with body pain and particularly a feeling like someone is stabbing a knife in my thigh and causing radiating leg pain.  My cold sore is healing,  my sniffles are easing and the chest congestion that was trying to take hold is almost gone thanks to my doTerra Essential Oils and Supplements.

My boys have begun term 3 well and there is more to share about how school has been for this year. My boys are now in year 8 and year 10.

I hope and prayer that this update finds you well and that we can continue to support each other in the every day that is Love, Life and Autism. xx

I am sure I am not alone in these feelings, whether you are a parent or care giver of neurotypical children or children on the autism spectrum or other additional needs.

As a follow on to an earlier post, I find myself still questioning how Sensory Processing Disorder works. Socks and shoes are still an ongoing issue and days at school are hit and miss for attendance. Soccer training and attendance and playing a Saturday game are also hit an miss.

Today, Mr 12 went to school in slippers. At school he went to change to socks and shoes to enter the hall for roll call. Thankfully, Learning Support had phoned and said we could go straight there. At this point, his socks were on his feet but it was hurting his big toe. I sat with him for approximately forty five minutes and helped him with his math booklet as he did not want me to leave. In the afternoon, a call from learning support had ensured me that his day had gone well. He had put socks and shoes on to attend a lesson and then kept them on for the rest of the day so he would be ready for soccer training tonight. Mr 12 did indeed attend soccer training and stayed and participated for the whole time. Today was a success and I have absolutely no idea how that happened!

Now let’s go back to the weekend where we did indeed manage to get to the game with plenty of time to get socks, shin pads and boots on. And here is where things went downhill at a fast pace. Firstly, the shin pads went on fine but that was where the good going stopped. The soccer socks were next and no matter how much pulling, adjusting, holding tight to get boots on, nothing was right. The socks didn’t feel right as they were no tight enough, they were too tight, they were too loose once in boots, they were too tight when I held the pulled tight sock to then get his foot in the boot. Boots were kicked off. I asked for permission from a club executive for him to play in joggers. I explained his autism and sensory processing disorder. The answer was, whatever it takes to get him playing. Unfortunately, that was not going to be enough to get Mr 12 to try and get shoes on his feet. By now, he was well and truly upset that his feet were not co-operating and he was frustrated. No matter what I tried, I failed. I was failing my boy miserably because I did not know how to help him. By now he wanted to go home. I tried a few more suggestions, but he curled up on the bench and covered his face. He was crying! I also wanted to cry. I have no idea how to help him. The visit to the podiatrist had not provided any workable solutions. We had to cancel our second visit to the occupational therapist as he was sick. We have another appointment for Occupational Therapy. We also have a consult with a Behaviour Therapist. But there and then, at the soccer field, I felt like a total failure as a mother as I have not been able to help my boy and there seems to be no answers nor an end in sight!

As I went to the team manger to return his team shirt, I turned around to go back to Mr 12, crying on the bench, to find him coming out to the team bench were the subs sit. He was welcomed by the manager and the coach. The coach gave him his watch and the job of timing the minutes for the subs to swap. Coach explained how the watch worked and Mr 12 was now involved with his team. He joined in team discussion and fruit and half time and then continued time keeping for second half. At the end of the game, coach told him to go shake the hands of the other team players as he is part of the team. I’m happy and relieved he is engaged with his team and heart broken that he is not playing a game he has loved. I am very thankful for a coach that is encouraging him and making the effort to keep him engaged.

I have no idea what tomorrow will bring. What will be the secret formula that will engage him to attend school? Will he be super sensitive tomorrow as he has spent so many hours in socks and shoes today? This is something I have not taken notice of before! As I write, this comes to mind, monitor the time he is in shoes.

I know I am a good mum. I know I am not perfect but I try my hardest to do what is best for my children and in particular for my boys, whom are still living at home, and will be for some time yet.

Sensory Processing Disorder is something I am still learning about, six years after we begun the journey of our diagnosis of Autism. My youngest boy, now 12, has always had sensory issues with his feet. It begun with needing socks and shoes to be tight. It meant having to replace shoes up to eight times a year due to them having to be tied up tight so they felt right on his feet. The past three years have not been so demanding in terms of sensory feet difficulties.

It now seems that puberty is approaching and this means hormonal surges. No surprises there, I can hear many of you say. That is true! What I am totally unprepared for is the effect it is having on his sensory system. My boy has spent more days at home than at school recently as getting socks and shoes on his feet has resulted in two hour meltdowns. It has been distressing to see him so upset and hitting his feet, saying his feet are stupid and that his feet don’t want him to even have fun at soccer. Two hours at a time when the need to wear socks and shoes arises. As we are currently in a school term, the meltdown was happening day after day. I watched as he pulled his socks so tight they crunched his toes. I watched as he put his shoes on and then took them off and threw them across the room as his feet didn’t feel right. I tried to tie his shoes tight to help him. I purchased sensory socks, to no avail. I took him to the Occupational Therapist who suggested therapeutic brushing of his feet. Will follow up in two weeks. We went to the podiatrist to see if he had any wisdom or insight to share. He suggested trying barefoot runners as he needs the feel of bare feet to help him ground and center. He is seeking feedback from his feet hence the need for such a tight fit. I thought to myself “that makes sense”. We went shoe shopping, again to no avail. A controlled meltdown occurred in store and the fact the he was about to get his first pair of Nike brand shoes did not persuade him in anyway to conform to my requests or suggestions. He only wanted to go home as his feet were stupid! Next week we return to the Occupational Therapist to see what happens next.

The podiatrist has suggested a mini trampoline for bouncing and providing frequent feedback for his feet – brain connection. A meeting at his school has resulted in him either wearing slippers or joggers to class depending on how he is coping each day. Learning support are also providing him with lesson work in the learning support area when he cannot attend class. The school want to see him continue to engage in school and participate as he has transitioned so well to high school.

But how long will this last? When will his sensory system allow him to continue as before? When will he happily get both socks and shoes on his feet? When will the hormonal chaos of puberty settle enough to make his days at school happy again?

That dreaded message, “I missed my stop”.
I reply, “OK. Get off the next stop” then send a second message “Are you ok?”
The first reply comes as “OK” and the second reply comes as “OK”.
Fifteen minutes pass and I send another message “Where are you?” and there is no reply.
So, here’s the story……
I arrived at my son’s Occupational Therapy appointment early to surprise him and take him to get afternoon tea. He is 15 and for the second time he is catching the train after school to get to his therapy session.
Last week he left school, and successfully caught the train to his appointment. This train travel does include a change of train. When he got to the station he needed to alight at, he did so and then walked himself to the therapy centre. He did walk down a wrong street and when he realized, he was a little anxious but walked himself back to the main street and found the correct street.
This week, he successfully caught the train, did the train change but MISSED getting off at the correct station.
The above conversation takes place between him and myself and then nothing. I have assumed his phone has no gone flat as he should be back in a signal area by the time I message him to see where he is.
I message my daughter as her husband works for the Railway. I message my friend who is also has Asperkids and she panics. I message the therapist and inform him that my son has missed his stop. I tell him I am at the centre. I tell him that this mummy is panicky. He arrives in what seems forever and is calm and relaxed. I say that my boy is missing and he says that he will turn up. I walk into the therapy room waiting for some action but that doesn’t happen and we chat a little about learning life skills and problem solving. well, of course that makes total sense, except I have no idea where he is as his phone is flat. I am reassured that he will turn up. Not helpful I thought, so I say “I’m going to buy his afternoon tea” as I think that there is no point running all over the country side, beside where would I start.
My friend is now ringing train stations to see if there is a way to track him. There are mixed responses with one station being very rude and dismissive and the other very helpful. My daughter is reassuring me that it is good life skills.

But, we haven’t prepped for this kind of scenario. He has no scripted plan. Will he be emotional and crying? Will he know how to get back? Will he freeze? What if the station he gets off at in unmanned?

As I am leaving the grocery, I see my boy walking down the street. What a relief to see him. He is safe. I want to go run and hug him. But I don’t and he doesn’t see me. I watch him, with his fidget spinner in his hand and spinning, and walking to therapy. I enter the therapy centre only a minute after he does. I can’t tell if he is angry or upset but I see he is hot. I ask him how he is and hand him his lemonade and finger bun. His answer is a mumble but that is ok. Given what he has gone through any response I get I am very thankful for.

You may be asking why I didn’t hug him? The answer to that is that I m very aware of how much my feeling and actions can impact the way something is perceived. Although I was panicking about loosing my boy, I also was aware that he has caught the train before and that I think he has enough common sense to to figure things out. He knew where he had to be, right? Of course, I did not know how anxiety would play out in this scenario. Would he be able to think and reason or has he become non verbal in this incident and therefore be unable to ask for help or be unable to think and reason out this situation for himself. I didn’t not want to make a mountain out of a mole hill as the saying goes. I did not want to add to his fear or anxiety of the unexpected happening. Later, after his session and at home, I told him how proud I was of how he handled the situation. We talked about the anxiety and again, I told him how proud I was that he kept calm enough to work out what he needed to do to get back to where he needed to be.
Mummy lessons learnt here:
1. Plan for the unexpected in travel training. Teach strategies for different scenarios.
2. Buy a battery pack, especially for use on therapy day when the boy is travelling alone on public transport.
3. Take into account stations that are manned or unmanned on the train line.
4. Learn how to install and use a’ find my phone’ type of app so that if there is no response from the child that I may at least know where he is.
5. Lesson learnt from younger son, that mum’s phone number is on their opal cards.
6. Be thankful for an amazing therapist, who believes in Mr 15 and can use each and every therapy session to teach my boy, challenge my boy and believe in my boy and help this mummy not to panic too much!

I find myself torn at times, I want my kids to do the best that they can but not use their disability as an excuse to not try. I do believe that allowances need to be made in order that the children can work and study to the best of their ability. If by approaching the task from another angle facilitates and enhances their learning, then why should they be boxed in to perform a task like the rest of their peers?

For example, when a child is sent home to rewrite a task because it is not good enough, is this ok? When the child can carry out the practical task at school, follow directions, be safe and observe and understand what is happening in the experiment but write very simple sentences to explain  the process, why is that not good enough? I think if the child can verbalize what he is seeing and explain that to the teacher, then surely the learning outcomes have been achieved. The teacher would be wandering through the class to supervise and assist, so why not ask the child who struggles to transition from spoken word to written sentences a few questions to ensure the content of the lesson is understood?

This is an issue I am currently addressing. I do not want to make a teachers life more difficult than it already is.  My boys have been blessed to have the most wonderful and supportive teachers, whom predominately have a good understanding of ASD and my boys needs. In mainstream school, each new year will bring new subjects and new teachers who need to be educated and supported to support not only my boys but other children who require additional support at time. As I missed parent – teacher afternoon due to other commitments, I need to make the effort to book a meeting.  

As parents, relatives and carers of children on the Autism Spectrum, we find ourselves having to be an advocate for our special people. I find that I also have to be an advocate for myself. Whilst I don’t have any disabilities, I do suffer from anxiety, depression and PTSD and being an advocate can be very distressing.

I left a marriage of psychological abuse in 2011 and also find myself drawn to be a voice for women who have experienced domestic violence of this nature. My heart has always been to love, support and care for the dis-advantaged, including numerous years as a foster carer. I also spent many, many years volunteering in the Welfare Arm of the churches I was involved in.

These days I don’t attend church and do have struggles with my faith. I have come to realize that the struggle is more to do with how people treat each other, not the infinite wisdom and power of God. I have been and am continuing in a Spiritual Journey of discovery about: What is Faith? Do I trust God? Do I trust People? Why Am I Here? What is My Purpose (beyond raising my kids)?

Recently I have had some experiences that have made me feel uncomfortable. I haven’t agreed with a group decision or a personal posting, finding it very judgmental and creating exclusiveness where I thought there was supposed to be openness and inclusion. I spoke up as I felt I needed my voice to b e heard, on behalf of others who may feel the same but not know how or be able to have a say. It was received with mixed responses, as expected, but still the need for exclusivity in this situation was dominant. I’m currently left with accepting the status quo in the exclusive group, leaving the exclusive group, staying but maybe not participating in the exclusive group. This exclusive group is a sub group of another group, the original group, and the original group is where I will stay.

I would love to hear from you, if you have experienced this or if you choose to reflect and answer the questions below.

1. How do you manage family duties as an advocate?
2. Do you feel heard when you advocate for yourself or others?
3. Do you question your whole sense of being and purpose?

Till next time,

Love and Blessings, Kat xx

https://au.pinterest.com/pin/AY88fubk6ymRxoU-R8eWeFXM81XFxB8j1KyWRcy1e88KHfRfJaE2imc/

The year is certainly speeding by and it’s hard to believe we are almost halfway through term three. The year has been without incident for Mr 14, unlike year 7, last year. But Friday saw that reality come crashing down.
On Friday I received a text message from Mr 14 saying that he doesn’t want to be there (at school). I learn that he had been trapped in a room by some kids in his class. He was unable to just open the door and leave as it was an outward opening door that the kids were leaning on and preventing him opening. When he did open the door, he punched o ne boy in the chest and subsequently received three punches to the head.
I arrived at school shortly after the text correspondence with Mr 14. School was surprised I was there as no one had yet called me. I informed them that I had received a text from my son. Mr 14 was filling out an incident report when I arrived at school. Within twenty minutes of the first text, I was at school and my boy and I were on our way home.
It appears that this has been targeted bullying. I am so sad for my son as he wants to go to school without feeling harassed and bullied. I am heartbroken for him. I know I cannot provide him with the learning opportunities he is getting at school, in the areas that interest him. I often count the years until he can leave the school system.
I certainly feel inadequate every time I have to go to a meeting at school. No matter how much I prep myself for these meetings, I don’t feel I do an adequate job. I did fear becoming that kind of parent that the teachers get sick and tired of seeing. I do know, however, that my boys have to face the consequences of their actions, and I never back down from that. They also need to learn to be more adaptable and to block out the verbal stuff, but at the end of the day, violence is not the answer. Maybe some lessons in self defence and being able to protect one’s head might not go astray!
I am exhausted. I have lost my train of thought, so I guess this is it for today.
May your week be blessed, be positive and love abound!

Let me begin by telling you that the morning after the yelling match all was rather quiet and peaceful. Mr 11 was up and dresses even before my alarm went off. The morning went smoothly, the boys got ready and we left at the right time for me to get to my appointment.

Today I received a  pone call  from my doctor’s surgery.  They have my results and would like to make a non-urgent appointment with the GP for follow up. Come Monday morning I will be at yet another medical appointment. This time it is well after school has started, so there is no pressure to be out the door so early.

Today I have also made contact with a Behavioural Support Assistant. I sent her a cry for help in understanding Mr 11. She also confirms that oppositional behaviour is commonly an outward sign of anxiety! In attempting to make an appointment, I say I am pretty free and the first three options don’t work due to the boys community access schedule being on the same afternoon but different times and to other family stressors! Looking forward to finally finding a matching time for us to connect. Relieved that I have reached out for help and have full confidence that we have the right support person for this as she knows our family and has worked with us previously.

I have also booked myself for a consult with my naturopath for a new programme to get my health in shape and manage and support my body in healing and restoration with all the health issues I have.

Spent the morning at a School Leavers Expo for people with a disability. Although Mr 14 is in year 8, I am gathering info and understanding for the next few years as some things can start as early as Year 10.

Mid morning till the time for school pick up saw my time spent with my partner. We went and got ourselves a coffee, had a chat and ran a few errands.

After school we stayed home, except for me going to get hot chips for dinner. I wasn’t feeling all that great as I had consumes two “real” coffees today, one at the expo and one with my partner. My body gives me an automatic clean out when I have to much or too strong a “real” coffee. Way too much real coffee today with an awful side effect and left feeling unwell.

This evening I finally finished pinning the inner lining for a 4.5kg weighted blanket. I have overlocked the edges and tomorrow will also sew the edge hems and the coloumns for the plastic pellets.

A rather productive day. Tonight the boys watched a movie together and then settled quickly and well into bed tonight. They both had Melatonin tonight.

And my joy of the day was laughing at our cat. He is a Ragdoll Lynx and gorgeous. When he pooped on the bathroom floor (discovered later as I am getting ready for bed) he comes running from the direction of the bathroom/bedrooms. Running like a mad thing on a mission. He was so scatty and crazy. HE is funny to watch and often displays this behaviour after pooping. I think I need a cat expert to explain to me the behaviour of this cat!